Living In The Moment

Making the most of life for us is turning out not to be trips to Disneyland or rides in chinook helicopters but enabling Tom to walk his dog, still visit the allotment with his grandad, go fishing with his dad and play outside with his sister. The simple things.

Living in the moment takes on a different resonance when your child has a progressive, life-limiting condition. We know we should make the most of each day, stop and smell the roses with our children, as Duchenne forces them to slow, and live a life full of love and laughter. But in reality, this is just the time that life gets harder, when housing adaptations, care plans, hospital appointments, drug trials (if we are lucky) and increasingly divergent needs of siblings overwhelm us and threaten to obliterate our patience.

Over the past year Duchenne has wreaked its damage and our son Tom has lost a lot of function. We have tried hard to find ways to keep Tom happy, socially included and resilient and wanted to share what has helped us.

The dog! After a disastrous start with an assistance dog from a charity that had to be returned, we bought Lily the Labrador when she was 6 months old and found an amazing dog trainer who agreed to train her specifically to meet Tom’s current and future needs. Unprompted, Tom’s Cub pack kindly raised money to help fund this training. The past 8 months have been extremely challenging as Lily has knocked my daughter Amy over and broken her foot, chewed shoes, clothes and carpets, chased horses, jumped our fence and devoured the whole contents of a strangers barbecue! But during training she is faultless and the happiness and purpose she has brought to Tom’s life has been remarkable. The arrival of the manual wheelchair has been eased by training Lily to walk alongside it without biting the wheels, stiff legs at night have been soothed by the warmth of Lily’s body as she sleeps next to Tom, and feeding and grooming her have given Tom responsibility. In time Lily will accompany Tom into school, shops and hospital as his assistance dog and remain steadfastly by his side.

The hospice. The first time I visited our local children’s hospice last year, the tears streamed and did not stop, but I have come to learn that hospices offer a variety of support services that can really help all family members. We now go as a family to use the hydropool and also access community respite which means that once a month a wonderful, fun person comes to our house to play with Tom and Amy or take them out on a trip. Listening to our needs, the hospice has also set up a support group for 4 Duchenne boys of a similar age to go and play and talk together under the supervision of a counsellor qualified in play therapy.

The off-road wheelchair. Watching Tom lose function and struggle has for me at times been unbearable. The moment I realised he could no longer easily access a beach, fishing lake, woodland and our road, I knew we had to act. Turned down by most of the wheelchair charities for an off-road model, we set up a Go Fund Me page and after clothes sales, a ball and hugely generous donations by friends, family and strangers alike, we bought Tom his mean, cool, orange terrain hopper. Making the most of life for us is turning out not to be trips to Disneyland or rides in chinook helicopters (although this is scheduled for the summer thanks to the Make a Wish Foundation) but enabling Tom to walk his dog, still visit the allotment with his grandad, go fishing with his dad and play outside with his sister. The simple things.

Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Decipha work face to face with families and offer a range of assessments and valuable support to boys with DMD and their families. Continue reading for a parent story about Decipha and more information from Nick, the founder of Decipha.

Sejal Thakrar from Smile with Shiv has written a blog discussing the many things they considered when starting their son, Shiv, on heart medication. Sejal highlights the importance of learning as much as possible about Duchenne.

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Duchenne affects approximately 1 in every 3,500 boys that are born but only around 1 in every 50 million girls. It may be rare, but it does happen. We have been speaking to Feriel, a 26 year old woman living with Duchenne muscular dystrophy. She has written us a short blog about her experiences with Duchenne from diagnosis to now.

Our co-founders Alex Johnson and Emily Crossley met after their sons were diagnosed with Duchenne muscular dystrophy. They both set up charities, Alex with Joining Jack, Emily with the Duchenne Children’s Trust.

We are proud to share with you our first ever Impact Report, read about the very real impact we are having and the many things we have been working on over the past six years to end Duchenne.
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